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phil

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  1. Thanks for your reply! I'm in Staten Island. My son was experiencing hip pain back in September. It was first diagnosed as toxic synovitis. When it recurred recently, his ped. tested for Lyme, which came back positive (from Quest). This week, the specialist told us that he was likely infected in early summer. I just ordered the Blood Collection Kit from IGeneX to test for co-infections. I'll PM you for additional info. Thanks again.
  2. Hi All, It's been a few years since I've posted. DS11, who had a mycoplasma infection and many of the issues associated with it, has come out on the other side. He's just started middle school and is doing very well! Unfortunately, DS8 has just been diagnosed with Lyme. Our pediatrician prescribed 500mg of amoxicillin, 3 times daily. We just visited an infectious diseases pediatrician this afternoon. I presented him with two questions: Should we test for co-infections? Should we be using an intracellular antibiotic? I was surprised that he answered "no" to both questions. He simply said the co-infection Babesia would have resulted in a terrible fever and headache and that would have been the end of it. As for an intracellular antibiotic, he looked at me quizzically and said, "Lyme is easy to kill.... You've been reading the wrong stuff." I may be a bit rusty, but I still believe next steps should involve finding an LLMD and addressing the two above issues. Any guidance / suggestions will be greatly appreciated. Thanks!
  3. DS5 has just been diagnosed with Benign Rolandic Epilepsy. Does anyone have any experience with this? Thanks!
  4. I recently posted regarding the fact that seven weeks of Zithromax (200 mg per day for MycoP) seemed to have no affect on DS5's chronic sinusitus, tics and OCD. But shortly after that post, the nose cleared, the tics vanished and the OCD (excessive handwashing for fear of breaking toys with dirty hands, etc.) has greatly diminished. A week or so before this, we incorporated two new things into DS's regimen: Cysteplus (NAC -- 1 500 mg capsule per day) and essential oil of oregano (applied to the soles of the feet each night.) This prompts me to wonder if the Cysteplus may have eradicated a biofilm in the sinuses or adenoids (he has huge adenoids -- 80% blockage -- being removed, along with tonsils, next month) which allowed the Zithro to finally do its job. Oregano is also extremely antimicrobial. Anyway, we have decided to discontinue the Zithromax in order to see exactly what kind of role it has been playing and run labs in a week or so. It's tough to stop something during the good times, but we hope this will ultimately help paint a clearer picture of the situation. Thanks for posting this article; it appears at just the right time for us!
  5. Hi All, Ironically, these past two days DS5's tics have diminished and OCD (handwashing) is at a minimum -- barely noticeable. Given this advance, it would be difficult not to stay the full twelve-week course. The tentative plan is to pause the azithromycin shortly before the t & a, although how much before we are not yet sure. Thank you for all your input! Biaxin is certainly still on the radar. -Phil
  6. Our latest dilemma: DS5 has been on Zithromax for close to seven weeks now to treat mycoplasma, and we have seen no improvement in tics or OCD behavior. I believe we are dealing with a macrolide-resistant strain and need to go back to the drawing board. But we plan to have a t & a performed soon and are hesitant to take him off the zithro until after surgery. On the other hand, the recent azithromycin study has prompted us to question if the combination of zithro and anaesthesia might be too much of a strain on the heart during surgery. A blood test will be done soon, and the myco-p titers may shed some light on things, but my understanding is that (according to G. Nicolson), the blood will not paint a truly accurate picture until four weeks after discontinuation of all abx. Our goal was to get DS5 strong before surgery, but the Zithro is really doing a number on his gut (despite probiotics), and I wonder if it has ultimately proven counterproductive. Any thoughts would be greatly appreciated! Thanks, Phil
  7. Philamom: We used the GI Effects Complete Profile -- Stool, with Metametrix. The fusobacterium and streptomyces came up high, but not high enough to be considered "opportunistic" infections. According to our ped., this is why the strain of strep is not specified. Regardless of strain, I'd like to see the numbers lowered and normal balance in the gut restored. MMC: Regarding your question about strep in the gut, Dr. Yasko makes this observation: "Streptococcal infection in the gut can serve as a reservoir to reinfect the sinuses. Chronic streptococcal infection has been associated with OCD behavior as well as tics, over stimulatory behavior and perseverative speech." (http://www.vsan.org/rok-az/methylation/AutismAnswerUpdatedGutprotocol4.pdf). This doesn't quite answer your question, but is of particular interest to me because DS5 has had chronic sinusitis since December. He's been on zithro for the past month for mycoplasma, but, as with all previous antibiotics, the nose clears for a few days and then returns to its stuffy, runny state. Because previous strep tests came up negative, I believed I was dealing solely with myco, but the results of this stool sample, in conjunction with Yasko's statement, seem in line with DS's situation. BWS: Thanks for the info regarding Raindrop Therapy. There is quite a bit of info out there regarding essential oils, particularly oregano, being very effective in combating strep; however, it seems they are also very powerful and must be used with care. I must look into this further.... Thanks everyone!!
  8. Update: fusobacteria sp. is in the 5th %tile (highest) streptomyces sp. is 4th %tile. I believe fusobacterium can be pretty dangerous and is treated with penicillin. Contacting our ped. regarding that. Streptomyces doesn't seem to be related to streptococcal, but I haven't yet fully researched this. Does anyone have any experience with this? Thanks!!
  9. DS5's stool sample reveals strep in the gut (4). I heard this can be treated with essential oils but haven't been able to locate any definitive information. Does anyone have experience with this? Thanks!!
  10. Excellent idea! We've been wanting to do the sinus culture because DS has had chronic sinusitis, but we've been holding off because it's an uncomfortable procedure, and he's been through quite a bit with doctors lately. Thanks for the info!!
  11. Hi Kiera, Thanks for your reply. The ENT our ped. recommended prescribed the antihistamine and corticosteroid which triggered the tics and ultimately alerted us to the bigger underlying issues (a blessing in disguise, I suppose). We haven't contacted her regarding the T & A yet. Whoever we ultimately go with, we'll be sure to confirm they're willing to administer IV abx and cultures! Thanks for the info, Phil
  12. Hi All, We are in the process of planning my DS 5’s T & A and are in need of some advice. He is currently on his third week of Zithromax (for mycoplasm) and we want to do a three-month course before the procedure, which would place it at some point in July. From what I’ve read in these posts, IV antibiotics will be necessary. Can azithromycin be administered intravenously? If not, is it advisable to do a test run of the IV antibiotic before the procedure? If anyone can offer any advice on this, it would be greatly appreciated. Our DS starts kindergarten in September, and we’d like to do everything in our power to give him a strong start. Oh, and if anyone knows of an ENT in the NY metro area who is familiar with the PANS/PANDAS protocol, I’d love to hear from you! Thanks, Phil
  13. Thank you all very much for your fast and informative responses! It seems most of the literature out there regarding PANS mentions strep, but not mycoplasma. Because my DS tested negative for strep numerous times, and does not exactly fit the standard criteria for PANS, I thought he was in the clear. But now the pieces are beginning to come together. Luckily my ped. is aware of this condition, and although I'm upset that he didn't call me immediately with the myco test results (I had to call this morning), I think he'll be on board regarding a long term abx treatment -- at least until we find an authority to help guide us through the process. I wish you all the best of luck on your journeys. I'll be back with more questions!
  14. Hi All, My DS4 developed motor tics after being on antihistamines and corticosteroids for a month due to chronic congestion that persists regardless of what antibiotic he's on. Tests showed allergies/sensitivities to egg, gluten, dairy, which have been discontinued for weeks, but congestion and tics continue. A blood test has revealed Mycoplasma IGG: 1.08 and IGM: 521. As I research, I'm starting to suspect that mycoplasma may be playing a larger part here than physicians thought (we've been told repeatedly that a stubborn infection might be living in my son's enlarged adenoids). Can anyone shed some light on these numbers for me? Thanks in advance, Phil
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